Has anyone had parathyroid surgery post kidney transplant?

[TmWeed]

I have hypercalcemia resulting from hyperparathyroidism and was wondering if anyone has had parathyroid surgery. I have been considering surgery but would first love to know others experiences.

[Dara3351]

I was on track for parathyroid surgery before transplant but when kidney transplant came up that was more important. Since transplant, I have not had any problems.

[Gremie in reply to Dara3351]

I had pre-transplant parathyroid surgery, which went well and slowed down damage to my original kidneys by years. Of the four parathyroids , one needed to be removed. I am a bit confused by your situation. If your parathyroid(s) was bad, wouldn’t it still be pumping too much calcium into your body, irrespective of transplant?

[TmWeed in reply to Dara3351]

Thanks for replying

[ashok5085]

My doctor has prescribed cinacalcet for high PTH and it is working for me.

[TmWeed in reply to ashok5085]

Thank you for that info

[Mary928 in reply to ashok5085]

I’m taking the same med

[TmWeed in reply to Mary928]

For how long? Have you had a transplant?

[ericgoodman]

I did last summer (18 years post transplant). Go to a specialty surgeon that does these frequently—outcomes are near 100% successful when you do. I went to UCLA for mine. You’ll be sore at first and need to take calcium supplements, but really not a big deal. Don’t go to a general surgeon.

[TmWeed in reply to ericgoodman]

Thank you for that information

[TmWeed in reply to ericgoodman]

Were you on medication for hypercalcemia before surgery? How many glands did they remove?

[ericgoodman in reply to TmWeed]

No meds for hypercalcemia prior. I pushed to have the surgery fairly quickly after diagnosis. They removed 3/4, which is more than typical.

[anne627]

I had 3 parathyroid glands removed in 2018 because I had osteoporosis and my parathyroid levels were high. My calcium level is normal now and I eat cheese every day to keep it from going too low.

[TmWeed in reply to anne627]

Thank you for your reply

[beth8366]

There is an excellent parathyroid clinic at Tampa General Hospital. Their website is parathyroid.com. Consult with them, they are wonderful. I've had 2 parathyroidectomies, 35 yrs apart. The second surgery was a breeze, outpatient, quick, relatively painless. If you need the surgery, you will feel much, much better afterward.

[TmWeed in reply to beth8366]

How soon after transplant was your first surgery?

[beth8366]

Both were before my transplant, the latest one was in 2016. I was transplanted 7 months ago.

[Dara3351]

I get my parathyroid checked periodically. I am the one through my research first brought it up to my nephrologist. It’s funny because tonight I met a nurse who had two removed... will definitely ask for another check on my next set of labs

[JoanC645]

Yes! Had parathyroidectomy in 2014, after first transplant in 1998. Very straightforward surgery, no pain (.seriously, and I am a wimp!), scar is very fine and is in one of those two natural creases in the neck, so no-one can tell. Back to work a week later- this was around Halloween and I had no covering on my neck scar!

[TmWeed in reply to JoanC645]

How many glands were removed?

[JoanC645]

They thought that 2 had been removed, but one turned out to be a lymph node - so just one gland was removed. My understanding is that the surgeon has to look around to find, and remove, enlarged glands. My sister had 3 removed around the same time, but she is not a transplant recipient.

[TmWeed in reply to JoanC645]

Does she need to supplement with calcium?

[JoanC645 in reply to TmWeed]

No, neither of us do. In each case, the parathyroidectomy brought serum calcium into the correct range.